UV Skins Sun Protective Clothing

I have been pale pretty much since I can remember.  Baby pictures reveal a platinum blond toddler with skin that rivals Snow White.  Eventually, time turned the hair from blonde to brown–but the pale skin tone remained.  I have vivid memories of nasty sunburns when I was a kid, back when it was not well-known the danger that this caused later in life.  Even now, I can burn at a moments notice in situations my darker skinned compatriots wouldn’t even blink at; cloudy with no visible sun–burned, winter month with limited sunlight–burned,  hiding out completely covered in shade–burned (damn you reflected rays, you get me every time).  While my ability to burn has always been top-notch, little did I know, dysautonomia would somehow manage to up the ante.

I am not really sure why or how, but dysautonomia has seemingly managed to make me more sensitive to everything, and that includes sun and sunscreen.  Combine that with the heat intolerance that is inherent to most dysautonomia conditions, and you have a recipe for summer hatred.  And I was resigned to hating summer and become an “indoor girl”. . . until I had a kid.  With the occasional exception, kids LOVE summer.  Sure, you get a pass for the first year or two after they are born, but it is all love affair after that.  Staying inside all summer is just not an option when you have kids.

I was a reasonably dedicated sunscreen user before dysautonomia–after all sunburns hurt!  However, after multiple summers of rashes that I could only assume came from sunscreens, I was about ready to become a night worshiper.  I needed to be able to take my kids outside, and specifically to the pool, in the summer but I was sick of itching for a week because of it.  Fed up,  it was either only go swimming at 8 PM  or later (when I could get by without sunscreen) or figure something else out.

Thus, I turned to sun-protective clothing.  A quick search on Amazon brought up several different companies that offer both short and long sleeve rashguards for swimming.  However, very few of them carry plus sizes, at least for women.  Apparently plus size women don’t need to worry about skin cancer.  Anyway, after striking out with several companies that make sun protective clothing, I googled my way on to the UV Skinz website.

UV skinz offered a variety of sun-protective clothing ranging from babies all the way up to plus sizes for both men and women.  It includes both swimwear and “regular” clothing.  Most importantly, they offered a variety of styles and colors in a women’s plus size–no more making a mens shirt “work” leaving me with my choice of black, grey, or navy.  Pink!  Teal!  Baby Blue!

UV Skinz states it’s clothing is UPF 50+.  For those not familiar with sun protective clothing, UPF (Ultraviolet Protection Factor) is different from the SPF (Sun Protective Factor) we are used to seeing on sunscreen.  Per the American Melanoma Foundation, UPF measures both UVB and UVA radiation are blocked while SPF is a measurement of UVB radiation only. While UVB is the one most often thought of in the ‘sunburn’ sense, there is increasing evidence that UVA plays a role in both skin aging and skin cancer.

Obviously, I have no way of testing to determine if the clothing is, in fact, UPF 50+. There are no FDA regulations for sun-protective clothing. However, all advertising claims ARE regulated by the Federal Trade Commission (FTC). Clothing and accessories that are labeled “sun-protective” should have a numerical value between 15 to 50. No clothing item with an Ultraviolet Protection of less than 15 can be labeled “sun-protective”. If a manufacturer adds a hangtag with a UPF 15-50+ rating to any product, it must adhere to the American Society for Testing and Materials (ASTM) standards.   If it has a hangtag, you can be pretty much assured it has been tested.

For reference, here are the UPF categories and how well they block UV radiation

And a chart showing where common materials used in clothing fall on the UPF spectrum (in general, not in any particular brand)

My first purchase from UV Skinz was the pink long sleeve rashguard (Sun & Swim Shirt).  I wanted to avoid having to put sunscreen anywhere on my arms, as this was the most common place for me to develop a rash with sunscreen.  I ordered my normal size and it fit pretty true to size.  Being a rashguard, it was by nature going to be a bit more snug that other clothes in my size.  However, it was not tight enough to make me self-conscious about my imperfections being on display.  I paired it with a underwire bikini top (worn under the rashguard) and men’s trunks that covered me down to my knees.

(Pink Rashguard/Long Sleeve Sun & Swim Shirt)

The arms are form-fitting enough that they do not move or slide up in the water.  The shirt trunk is less fitted than the sleeves, and it can occasionally drift up in pool.  However, I personally prefer having to occasionally pull it down than have it be tight-fitting around my stomach (aka, one of my “problem” areas). After half a summer of use, the white sleeves still seem pretty white–will make sure to update if that changes.  When wet, the rashguard does show a little bit of my bikini top pattern (a black and white  chevron, so pretty distinct) but does not show anything else.  The white on arms becomes more see-through than the  pink; it is possible an arm tattoo or similar might show through.

(this, but in pink)

After trying out the pink rashguard a few times, and spurred on by a sale for Melanoma Monday, I decided to order the Swim Jammerz and Water Jacket my second time around.  I was not really digging the men’s swim trunks I was wearing and was looking for something I could wear as a lightweight jacket that could cover my torso but would not be too hot.  I got the Jammerz in black and Jacket in teal (dysautonomia awareness color! or at least pretty close).

(Swim Jammerz)

I have really enjoyed the jammerz; they are a big step up from the mens swim trunks.  The color (black) helps makes up for the tighter fit, as does the fact it is fully lined.  My normal size was once again a good fit, though the jammerz have a higher waistline than I prefer (mid-rise is more my taste, probably generational).  I still wear bikini bottoms under the jammerz, though you really do not need to–just never been much for that ‘commando’ feeling.  It provides coverage that goes down just past the top of the knee, which also puts me right in line with the “neck to knees” protection so often advocated for.

(Water Jacket)

I have not had as many chances to use the water jacket yet.  While it is made to use in the water (similar to the rashguard) I mainly got it as a sun protective jacket.  There is enough room in it that I can use it as a jacket (e.g. wear other clothes underneath), but wearing anything baggy does look a little weird.  It works best when you are wearing something not too long and form-fitting underneath.  The jacket itself, however, is not particularly form-fitting and probably even a bit looser fitting than the rashguard.  The teal color does seem to be a bit more see-though than the pink, which is not surprising considering how bright the pink is.

(everyday “normal” UPF clothes)

I have not yet tried any of the ‘normal’ clothes from UV skinz, but would be open to it in the future.  The products I currently have feel like swimsuit material, which makes sense since they are all made to be able to use in the pool.  Whether the ‘normal’ sun protective clothing feels less ‘swimsuit like’ I can not say.  They have some really cute designs for girls, but I am less impressed with what they have for the boys.  And since I have boys, I have not tried any of their kid clothing.  But I would not be opposed to trying it in the future, especially with some design and color updates (dark colors are still hot, even in sun protective clothing).

(they got the kids covered too)

I have definitely enjoyed having my UV skinz swimsuit this summer.  But I am not going to lie, I do get some weird looks.  Nobody has ever been rude enough to say anything, but I catch the occasional double glance.  Whether they are looks of confusion, derision, or envy I will never know.  I would probably get fewer stares if I was on a coast or near a beach, where the problems of long-term sun exposure are more visible on a day to day basis.  Sadly, taking care of you skin is not as popular as it should be, especially among the young (see the entirely idiotic SunburnArt trend).  Often only myself and my kids are wearing rashguards at the pool.  But frankly, I just don’t care.  I would rather gets stares then burn or get rashes from sunscreen.  Dysautonomia has forced me to swallow my pride about a lot of things, but so far, this one has been pretty low on that list.

(putting on sunscreen . . . always a fight)

And, I have to add, I LOVE not dealing with the sunscreen hassle anywhere but my face, and I REALLY LOVE not having to deal with the sunscreen hassle with my kids (who have UPF swimsuits from a different company).  Seriously, even if I didn’t get dermatitis from every sunscreen (or lotion, or perfume, etc.)  known to man, I  would probably opt for the UPF clothing just because it is so much easier than the sunscreen hassle.  Throw it on an go.  No waiting/getting it on 30 minutes beforehand.  No reapplying every 60-80 minutes.  No trying to figure out which sunscreen uses the best non-toxic chemicals while still providing good protection (seriously, google it, it will make your head spin).  It is just easier, which is a big help when energy conservation is the name of the game like with Dysautonomia.

 

UZ Skins UPF50+  Sun Protective Clothing, various sizes and prices, available at www.uvskinz.com

Review-Squid Medical Id from My ID Square

When I first set out to find a medical id bracelet, I knew I was going to need a fair bit of space to fit everything I wanted to convey to emergency workers or doctors.  I also knew that the information on it was likely to change often, as I felt including my long/weird/rotating list of medications was important.  My first stab at a solution for this was the Vital ID medical bracelet.  The paper insert allowed me space and flexibility to write (most) everything I wanted, and it stuck out enough that I felt most emergency workers would notice it.

However, I still wanted to be able to convey more.  I began looking for more “techie” solutions to the problem.  I had seen the USB based medical jewelry, but had been warned EMTs would not be able to access it and Hospitals were too cautious to put foreign USBs in to their computers anymore thanks to the increasing problems with hacking/malware/identity theft breeches (big HIPPA fines).  So that was out.  Then I stumbles across QR code based medical jewelry.

A QR code, for those unaware, is kind of like a barcode on steroids.  In many cases, it allows you to link directly to a specific, online website.  Once pretty obscure, they continue to grow in popularity, and not just for medical ids.  Checked out you McDonald’s cup recently? You will probably find a QR code linking you directly to the nutrition information.  Need video instruction on how to put together your kids new toy? Scan the QR code to be taken to step by step YouTube instructions.  Once you start looking for them, you will start spotting them everywhere.

Their popularity is increasing, partly due to the fact they are pretty much universal (no matter which QR code app you use, they all go to the same place) and partly because everyone plus their dog has a smart phone.  No longer do I have to go home and hop on the laptop to know the fat content of my Big Mac, just scan the QR code with my phone and I have instant access.  As Dean Pelton would say, easy peasy lemon squeezy.

Thus, the point of a QR code based medical id is to link to an online website that has your medical info.

After researching different companies that offered QR code medical jewelry, I decided on My ID Square.  One of the most important factors for me was the lack of a yearly fee–my “Squid” purchase came with a lifetime subscription to the website.  I had also read reviews that said My ID, another prominent QR code medical jewelry company, had problems with their QR codes wearing off and becoming unusable. The Squid can be accessed both via a smartphone with any QR code reader (many to choose from, most are free) or online via a website and pin code.

The variety of accessories that was available on the My ID Square site was a definite plus, though it is easy to see that bracelets/necklaces not from them would work just as well when paired with the Squid.  Taking advice from EMT’s I had spoken with, however, I did not want to make my bracelet too “jewelry like” and thus went with a plain silicone band.

I also liked the clip-on charms they recommend, a way to get across quickly your medical condition before scanning the squid and help draw attention to the bracelet.  The ‘multiple medications’ one certainly fit, but otherwise the closest thing to what I have was the generic ‘heart condition’.  However, then something really cool happened.  After several requests, they company offered a pre-order for a POTS charm.  If they got 12 orders, they would go ahead and make the charm!  Not long after, request and pre-orders for Dysautonomia, EDS, and Gastroparesis were made.  But they had me at POTS, I had to have one.

I waited anxiously for my new squid, charms, and bracelet to arrive.  Seemed like forever, but it was only like 2 weeks.  Since then, I have been very pleasantly surprised how much I like it.  I was somewhat dubious about the silicone bracelet; I was worried it would look silly/tacky for someone my age to be wearing a silicone bracelet.  But I actually really like it.  I, of course, got it in Aqua for Dysautonomia, and was happy how similar to turquoise it is.  And, not surprisingly, it is pretty comfortable.  The actual color of the Squid I wanted was out of stock, but it retrospect I think my second choice color actually works better.

The web profile was easy to activate and simple to input the information.  It offered options for

• Name, age, photo, languages spoken
•  Primary doctor and contact info
•  All other doctor’s contact info
•  Emergency contacts phone, text and email
•  Medication, food and other allergies
•  Surgeries
•  Medical Problems
•  Medical Devices
•  Medications
•  Pharmacy
•  Advanced Directive information
•  Date of last tetanus shot
•  Where your electronic health records are stored
•  Preferred Care Center

It also has a spot where you can put general information that might be pertinent in an emergency, such as where a epi pen can be found, or in my case, to give fluids.  It also gives the option to download or email the information if wanted.  It cannot, however, link to a full EMR record, at least not currently.

As a final neat trick, anyone who scans your squid can press a button to alert your emergency contacts that your Squid has been accessed.  You can set it up so they receive a text, email, or both.

I do wish it had a little more room and/or areas where I could give instructions.  The lovely thing about having a condition nobody has ever heard of is you spend A LOT of time explaining to doctors how to treat you.  I carry summary medical journal articles of my conditions in my purse, you know, just in case google happens go down or something.  I would love a bit more space to include “more information” links about my conditions or detailed instructions from my specialists.

Thankfully, I have not had my Squid scanned yet (by medical professionals, anyway).  I asked a couple of local first responders if they would know what to do if they saw one, and that has been a bit of a mixed bag.  However, they all thought it was really cool after learning about it.  Hopefully as the word about this kind of technology gets out, awareness of how to use it will improve as well.

For me, one of the most comforting facts about having the Squid is that both my husband and myself are able to scan it.  The majority of the times I have ended up in the ER, it is because my husband is taking me in to get fluids after an episode.  I don’t need an ambulance, but I do need a liter or two of fluids.  And if it is to the point I am needing to go in for fluids, I am usually not at the top of my game.  I am often out of breath, brain foggy as all get out, and filling out forms while describing my multiple conditions is not exactly easy.  Now, either of us can just scan the Squid and hand it over.  Could I do the same things with a piece of paper in the purse or wallet . . . probably.  But this is much easier to update (vs. editing and reprinting or someone trying to read my chicken scratch) and my phone is always on me–not always so with my purse.  It did, however, prompt me to finally upgrade to a knock-off brand smartphone.  So I guess I can also thank it for also nudging me into the 21st century.

(My previous phone–most of you probably don’t even know what this is)

In terms of security, someone must scan the QR code or visit the website with your personal pin code (on the back of the squid).  As you can see, I covered my squid with tape before taking a picture as you can access the online profile even by scanning a clear enough picture.   For this reason, I also tend to wear it on the inside of wrist, though I doubt someone could get close enough to scan it without me noticing.  Plus, I figure if I end up on the floor, I will probably be palms up anyway.

According to the company, the info is protected behind  a “firewall protected secure database. Customer information is never shared, sold, or otherwise provided to third parties.” Obviously, if it is on the internet, it runs the risk of being hacked.  But with the mandate for medical records to go electronic as well as several high-profile hacks of big healthcare companies (one of which I know my data was included in), I figure my medical info is probably going to get out eventually anyway.  Heck, the NSA probably knew what I had before the Doctors did.  Even so, I only put information on my profile that I feel pretty comfortable about if it somehow did get out.  For instance, I do not put my address, my insurance information, and for the love of all that is holy, DO NOT put you Social Security number on there.  In my mind, the risk of it getting hacked is pretty minimal, especially since my Squid profile contains at lot less info than some of my other electronic medical records.

The one problem that I had with my Squid medical id was actually a problem with the POTS charm I was so excited about.  Unfortunately, after a few months, the ‘POTS’ started to rub off of the charm.  I contacted the company to let them know about it, and they reported that there appeared to be a defect in the manufacturing process, and that others had reported similar problems with their POTS charms.  The offered to replace the charm with a new one after they finished switching charm manufacturers in a few weeks.

I am happy to report that they did replace the charm, and it now seems to have some sort of protective coating to prevent it from happening again.  They replaced and mailed it free of charge, and even emailed afterward to make sure I was happy with it.  So A+ for customer service!

Overall, I am pretty pleased with my Squid medical id.  However, I will add that I do not exclusively wear my Squid.  I also continue to wear my Vital Id bracelet as well.  I figure by wearing both, I have all my bases covered.  I realize not everyone knows what a QR code is, and rural emergency responders are not always issued smartphones as part of their job.  Indeed, in my mind, I keep my traditional medical id around more for the EMTs/field responders, the Squid for the emergency room/hospital.  However, I figure if we are talking about emergencies, the more options covered, the better.

Squid medical id’s by My ID Square, available in both a charm and as a dog tag.  $58 at http://www.myidsquare.com/pages/squids-square-ids-that-connect-to-medical-profile

Bonus: Sales of the Dysautonomia charm benefit Dysautonomia International

Review–Travelchair Slacker Chair

Pretty much anyone with any form of Dysautonomia can talk to you about the importance of being able to sit when needed.  While there are many different forms of Dysautonomia, as far as I know, pretty much all of them have issues with standing for too long.

Thankfully, much of the “regular” world also likes to sit.  More often than not, if you are inside you can often find somewhere to sit.  This can be a bit more complicated when outside.

If push comes to shove, you can always pull up some floor/ground.  However, this is often not a particularly nice or hygienic option.  So, as much as I enjoy sharing some space with ants and the like, I have learned to bring a seat along with me when I anticipate a situation with limited seating.

Like everybody else in the world whose kids have ever played an outdoor sport, I have bag chairs.  However, the size and weight of lugging those over long distances can get old very fast, especially when you have dysautonomia.  Thus I began my search for a seat the was small and portable.

I finally decided to try the Travelchair Slacker Chair.  It was small, lightweight, and could hold up to 275 lbs–so anyone in my family could use it.   They only had plain black when I bought mine, but now several more “fun” colors are available.

The seating area is not particularly large and is triangular-shaped.  This pretty much requires that you keep one of the “points” of the chair at the front between your legs with the “back” of the triangle for your derriere. This is not as comfortable as a more traditional stool–not really even close, honestly.  But it results in the stool needing very little space to work, and in turn helps it close up very compactly.

When folded it is quite a bit smaller than other chairs I have owned, but I would not say it was the size of a newspaper like it boasts in the description.  I would guess about 2 feet or slightly under in length when folded.  The circumference is pretty compact when folded as well–a reviewer on Amazon put it as 7 inches and that sounds about right.  It has a velcro strap for keeping it folded and an adjustable strap for carrying (or slinging on to my Rest-n-Roll cart).

As stated, the seat is definitely not the most comfortable ever.  However, it is better than standing.  I doubt I  have spent more than an hour in it at one time, and while certain parts of your posterior may need a little rubbing to get all the feeling back (especially if you have a larger one like me), it was manageable.  And while I would not want to spend a whole day in it, the times I have used it when starting to feel unwell, it was enough of a seat to give me a chance to calm my body down.

In a surprising turn, the places I most often use it are indoors.  The most common use is visits to my kids preschool where all the chairs are just so tiny and low to the ground.  The other often used place has been at home.  It is so easy to fold and lightweight, I sometimes find myself just taking it with me from room to room when I need to sit while doing/in between housework.  It is small enough I can fit it back by the washer/dryer when moving clothes, in front of the pull out freezer when I need to dig to find stuff, or in the toy room when sorting though/cleaning toys.  I had really anticipated more outdoor use, but that has not been the case.

The stool sits pretty low to the ground.  Not enough to give you that “OMG I am falling” feeling when you sit in it, but enough that it could affect a bad knee if you had one.  You would probably feel a bit low if you tried to sit at a normal table to eat, but not low enough that eating at said table would be impossible.

All in all, it is not a bad little seat–just not for long sitting-marathons.  It is small, lightweight, and reasonably easy to pack and take with you when needed.  More often than not, I am glad I brought it along.

Slacker Chair by Travelchair $18.40 from Amazon and other retailers.

 

My Mobile POTS/Dysautonomia Bag

To say that chronic illness requires you to make some adjustments in life is a bit of an understatement.  Each individual must learn how to adapt to their new situation, something often easier said then done.  As it turned out, My type A ‘must plan everything’ personality is not particularly compatible with having a condition like Postural Orthostatic Tachycardia Syndrome.  The last several years have been a lesson on learning to live in the moment and realizing plans are made to be broken.

    

That said, some vestiges of my ‘plan down to the minutest detail’ personality still survive.  As such, I have a “POTS Kit” I try to keep with me at all times–because, as we all know, stuff happens.  This is somewhat easy for me as I have always been a “big purse” girl.  As such, I have a lot of space to work with.  So, here is what I keep in my POTS kit, which fits into my purse, backpack, messenger bag, or whatever I am using to keep my stuff on me at any particular moment.

 

Contents:

• Wrist Blood Pressure Cuff
• Pulse Oximeter
• Powerade Zero Drops
• Pedialyte Sticks
• Elete Electrolyte Drops
• Thermotabs (blue pill box)
• 3 Day Supply of all my medications (My Pills box)
• Back-up Medical ID
• Medical Journal Summaries of my Conditions (not pictured, kept separate in purse pocket)
• 8 oz bottle of Powerade Zero
• Mini bottle of tums (for those bad tummy times)
• Wisps mini disposable toothbrushes (for when bad tummy times come up for a visit)

Do you have a portable “kit” you keep in case of emergencies when out and about?  What do you keep in yours?

Review–Mio Alpha Strapless Heart Rate Monitor

So, I am getting this review out late enough that there is now a Mio Alpha 2, as well as a Mio Fuse, which are all more recent that what I am currently using.  However, I am going to review my Mk 1 Mio Alpha anyway.  Obviously, I cannot say how well it translates to the more recent versions, but take from it what you will.

I have been using the Mio Alpha for more than a year now.  For those that have not read my primer on heart rate monitor watch, the Mio Alpha uses an optical sensor to measure and track heart rate.  This is the same technology that is used in the pulse oximeter, aka, the little pincher contraption that nurses put on your finger to make sure you have enough oxygen in your blood. In addition to your blood oxygenation, however, it can also indicate your heart rate.

The Mio Alpha will not track your oxygen level, however. It is strictly heart rate.  It can track your heart rate in two modes.  First, a “passive” tracking where it displays your heart rate but notifications are off.  The second, “active” mode, you can set a high and low boundary for your “target zone”  and it will alert you if you go above or below these limits.

I find I more often just leave it in passive monitoring, mostly because the beeping when out of zone can get pretty annoying.  I have been at this long enough to recognize the feeling of when I need to check what my HR is doing.  You can also press a button to toggle between the time, heart rate, and a stopwatch if you prefer not to leave your HR visible for all to see.

In terms of HR accuracy, I have found that the Mio Alpha is usually accurate . . . eventually.  But sometimes it takes a while to get there.  Too much wrist motion seems to throw it off; not so much the swinging of the arms motion (like jogging) but more the wrist motion of folding clothes, typing, washing dishes, etc.  It is usually temporary, and rights itself once I stop, but it is pretty common.  I have caught some heart rates on it that I can physically count and know that the watch is off; I usually attribute these to too much wrist motion.

Also, unlike chest strap based HR watches, it is unlikely to catch the rapid spikes in Heart Rate (HR).   I know I can get rapid and dramatic rises in HR when I change positions, move my arms around too much, or sometimes even breathe deeply.  They generally don’t last long (generally under 30 seconds, many times under 10).  These, however, have proven to be beyond what the watch can catch.  If you are trying to catch every little (or big) up and down of your HR, the Mio Alpha is not going to do for you.  The watch takes several seconds to adjust to ups and downs in HR, and sometimes the spike is over before it can adjust.

Cold seems to affect the performance as well, though this is likely more me than the watch.  I know many people with dysautonomia also have Reynauds, or at the very least have some extreme blood vessel constriction/dilation in the hands.  But when outside in the snow, it did have more trouble keeping track of my HR.

Finally, I noticed one last issue with the watch, and it would probably not be a problem for most people.  However, I have the flavor of dysautonomia that results in wild swings in blood pressure, both systolic and diastolic.  This can result in pretty crazy pulse pressures, ranging from 60+ to 11.  While, in my experience, these odd pulse pressures are pretty transient, they really screw with the watch.  Not really surprising, considering how the watch works.  Typically, I find when my pulse pressure is low (indicated by a weakly detectable pulse) the watch thinks I have a really low heart rate (like 40-50’s) when I can clearly feel that it is higher than that.  While I know that the HR is inaccurate at times like this, it is helpful in that it indicates (albeit indirectly) that my blood pressure is struggling to maintain balance, and it might be time to find a seat.

Now that I have expounded of the flaws of the watch.  Let me tell you what i like.  I LOVE not having to wear a chest strap. LOVE, LOVE, LOVE.  I can wear the watch all day.  It can still go all day on one charge, even on active monitoring, after a year of use.  No annoying rashes from chest straps, or having to take the chest strap on and off as needed (since it kept giving me a rash with all day use).  When it comes down to it, it is just plain easier for me to use.  The trade-off is that I know it misses some HR spikes and drops.  In the beginning, I wanted to know what my HR was doing each and every beat.  However, 4 years later, that is not so important to me anymore.  I mainly need to know if my HR is going high or low, and if it is staying there.  I now know that a 10 second spike up to 160 bpm is not really going to cause a problem.  However, if I spend a couple of minutes up in the 160 range, I know I am at risk of syncope or pre-syncope.  Thus, having the watch alert me to prolonged high HR is my early warning, so to speak.  Secondly, it offers a certain piece of mind, especially when out and about.  If I feel that familiar wave of light-headedness, I can check the watch and see the my HR is not in a danger zone, yet, and I just need to stop for a moment and recover.  Could it be a bit of a crutch for me, . . . probably.  But I figure if it helps me out the door, there are worse bad habits to have.

I am not going to lie, the Mio Alpha is not the prettiest watch around–though most HR watches tend not to be.  Even with the new purple color, it is still a pretty masculine looking watch.  Just comes with the territory, unfortunately.  Not exactly dainty, either.  It also lacks a backlight for checking the watch in low-light situations, a pretty annoying feature actually.  But I believe the Mio Alpha 2 has remedied that problem, as well as added step tracking, calories, etc. that many of the activity trackers on the market now have.

It also has the ability to sync up to your smart phone to track heart rate via bluetooth+.  I do not have a phone capable of doing this, so I am not able to keep and record my HR patterns.  To me, this was not a big deal as I was mainly only interested in real-time heart rates.  However, if this is important to you, make sure you have a compatible device.

Finally, the customer service I received from Mio was pretty good as well.  The charger for first watch I  bought had an issue and frequently refused to actually charge the watch.  After contacting them, they asked me to send the charger and watch back, after which they would send out a new one.  I had to pay return shipping (which was annoying) but nothing for the new watch.  Later, just before the one year anniversary of me getting the watch, I had a side button break.  Once again, Mio completely replaced the watch with the only requirement that I send back the defective one (at my expense).  Do I think they should have paid the return shipping . . . yes.  But in this day and age, customer service has become a rare commodity, so I will take it.

One final note.  As far as I know, the Mio Alpha can only be charged via a computer USB port.  I am on the computer all the time, so it is very easy to plug it in and charge.  However, if you rarely use or don’t have a computer, this could present a challenge.

Mio Alpha $149, available at Mioglobal.com and various other retailers

 

Invisible Illness & Invisible Disability Signs

For those who follow my blog, Pinterest, or Facebook page, you have probably already seen these.  When I first had the idea to create some home-printable business cards for awareness, I wanted something that got the point across that even though I look fine, I have a disability.  The wheelchair, of course, is pretty much the universal sign of disability.  The problem is, I do not often have to use a wheelchair.

On my worst days, yes, I may need a wheelchair.  Other days, I may use my rolling cart with a seat.  Still others, I may be perfectly fine just walking by myself.  Dysautonomia is like a box of chocolates, you just never know what you are going to get–it can vary from day to day, hour to hour.

However, that reality does not fit well in to  society’s perception of disability.  You either are or are not disabled; no one believes it can be a transient state.  Yet for millions of those with chronic illnesses, it CAN be a transient state, or at least a varying one.  People don’t understand why one day you can be at Nordstroms shopping like a normal person, and the next day at Walgreens in a wheelchair.  And without one of the universal signals that conveys a reason for needing assistance (e.g. grey hair or an appendage in bandages) one is likely to get strange stares at best, and nasty comments at worst.

At one point, I was actually considering buying a walking cast to wear when I felt I needed to use a wheelchair or mobility cart at the store.  If I was wearing one of those (despite the fact I did not actually NEED it) I was unlikely to be bothered or questioned.  I never did buy the walking cast, mostly due to the expense, but also because I felt I should be strong enough to defend myself and my invisible disability.  Yet I found myself just avoiding leaving the house all together; the thought of possibly having to deal with mean, ignorant people while also feeling like crud was just too much.

Thus, began my search for an image that conveyed that though I look “normal,” I have “unseen” issues that affect my abilities.  I did not want something sarcastic or confrontational, even though I could definitely identify with those sentiments.  And I did not want to go into too much detail about my particular condition.  I wanted something professional, quickly identifiable, and universal.  Because, sometimes, I just don’t feel like explaining my entire medical history since no one has ever heard of what I have.

Best I can tell, there does not seem to be any universal symbol of invisible illness or invisible disability.  There are some for individual situations–such as hearing impaired or blind–but nothing for a general “my body just does not work right.”  I really like this one:

But A) the image was intricate enough it did not work well as a small image on a business card and B) it still used the wheelchair, something that not everyone with invisible illness and disability uses.  Thus, I made my own.  Working with symbols that already had widely known meanings, I decided to put the Rod of Asclepius (not to be confused with the Caduceus) into the widely used signs for Man and Woman.  I probably could have just used the Man symbol, as it seems to be the default, but as a woman with an illness that most often affects women, I just kind of liked the idea of a gender specific one.

I spent a lot of time trying to decided whether to use the Rod of Asclepius or something else.  I even focus grouped it on a couple of my chat groups.  While not all invisible disabilities are thought of as “medical” in the same sense that most invisible illnesses are, it seemed to me that a lot of them were at least biological in nature.  Thus, I felt that Rod of Asclepius was the most representative symbol that was widely recognizable.

So, a little paint action later, I had my symbol.  I made one for both Invisible Illness and Invisible Disability, as I know some with chronic illnesses have issues with the “D” word (I know it took me a long time to embrace it).  I made generic ones, both man and woman.

And later made versions that also include mentions of specific conditions so I could continue to raise awareness for both my condition and invisible disabilities/illnesses in general.

I keep the ones I have made on my Pinterest page, and have posted a few of them here.  While I don’t ever expect them to receive wide-ranging recognition, anyone who wants to is free to use them in hopes of conveying their situation to others.  They are available free of charge for personal, non-commercial use.  Any other uses, please contact me first.

Also, if you are interested in a sign with a disease or condition not already available on my Pinterest page, please feel free to message me or comment below, I would be happy to make it for you.

Heart Rate Monitor Watches – A Primer

One question I see asked about time and time again on my dysautonomia chat groups is . . . What about heart rate monitor watches?  For the uninitiated, some dsyautonomiacs wear heart rate monitors to let them know when their heart rate is getting too high, or too low, or just doing funky stuff.  In the mainstream market, they are intended to assist with hitting targets during training and work-outs.  We have kind of hijacked them for our purposes.

Their use can be somewhat divisive in the dysautonomia community—some claim they can make a person paranoid, always watching your wrist instead of focusing on how you feel.  Others feel like they are a lifesaver.  I am pretty much in the camp of “do whatever you got to do”.  Some will probably obsess, others not so much.  Some may use it as a crutch, but if it is a crutch that allows you to get out of the house, maybe there is some merit.   Only you can make that call; I am not going to get on you either way—we are all just trying to get through the day.  I personally use them, and find them helpful.  So, like many of my other reviews, I want to share my experience.

But before I get into specifics, I want to give you a little background—a primer, so to speak.  As far as I can tell (seems like technology is always changing), there are 3 types of Heart Rate Monitor Watches available right now, as least in the US.

Type 1-Active Watch-Only

The most basic, and usually cheapest, is a watch-only device.  In order to view your heart rate, you must take a finger and place it on a special spot on the watch for a few seconds, and the watch will read your pulse.  You can think of it as a digital upgrade to the “put your fingers on your neck” trick.  This type of watch will only offer active monitoring—it will not monitor your heart rate unless your finger is on that specific spot. It cannot alert you to a high heart rate unless you think to check it.  There are many different makers of this type of heart rate watch, and prices can vary.  However, most heart rate watches under $40 will fall into this category.

Bowflex EZ Pro

Type 2 – Passive Watch/Chest Strap Combo

The second type of heart monitor watch can offer continuous monitoring.  This set up will include a watch as well as a chest strap of some kind.  There are many different makers of both watches and chest straps, some intercomparable, some not.  Some will also sync up to apps you can run on your phone or iPod.  You will have to do your research to find out which ones do and don’t—too numerous to list here.  One must wear the chest strap, which usually includes a removable monitor,  that then communicates your heart rate to the appropriately synced watch.  This type of set up allows for passive monitoring, aka you do not need to do anything other than get it set up for it to monitor your heart rate.  Several types also have a function for setting a target heart rate zone, so the watch will alert you if you go above or below this zone.

Polar FT4

The only limitations on how often or long you wear this type of heart rate monitor watch are the batteries and your tolerance of wear the chest strap.  Some brands suggest wetting the chest strap for a better connection, which may irritate sensitive skin.  And as the chest strap needs to be flush against the chest wall, some may not like the feeling of tightness around the chest.  Many in this category offer other features as well, such as tracking calories, workout timer, etc. as these are mostly targeted towards the working out crowd and not the crazy high heart rate for no reason at all crowd.  Prices on this type of monitor can vary greatly, depending on the extra bells and whistles you want.  Plenty of more basic models can be found under $100, and occasionally under $50.  Higher end models can run a couple of hundred dollars and can include GPS, syncing to your computer/phone, and keeping your heart-rate records stored for future access.

Type 3 – Passive Watch-Only

The third is a relatively new addition to the market.  These are watch-only models that allow passive monitoring.  Despite being new, they use a rather old technology—the good old pulse oximeter.  Yes, that thingy the doc puts on the end of your finger that indicates your pulse and percent oxygen saturation.  Pretty much the exact same thing, but moved on to the wrist—and it only does pulse, not oxygen saturation (probably could if they programed it to, though).   As far as I can tell these are the only watches on the market can do passive monitoring without a chest strap.  And they tend to be pricey, average about $200.  I am only aware of 2 watches that fall into this category, at least as the moment–the Mio Alpha and the Basis B1.  It is unclear if more manufacturers will start making this type of watch or not.

Mio Alpha

Activity Trackers

A somewhat new category that is tangentially related is the activity tracker.  Activity trackers are generally just fancy pedometers.  Depending on the model, they may be able to track sleep, stairs climbed, or even calories if you use synced phone apps.  Their accuracy is somewhat debatable at the moment, and most do not track heart rate.  However, the Basis B1 (which is like a cross between the watch-only passive heart rate monitor and an activity tracker) does both as well as the Polar activity tracker that can sink up with a polar chest strap to track heart rate.  Which pretty much makes it exactly like the chest strap-watch combo except as a bracelet instead of a watch—and extra bells and whistles.

Polar Loop

Hopefully you now have an idea about the different types of Heart Rate Monitor watches available.  Now that you have the basics, be on the lookout in the next few weeks for reviews on a couple of different Heart Rate Monitor watches.

If I have missed a type or category, please feel free to let me know in the comments.

Apex Pocket Med Pack with 7 Day Tray

I have been somewhat remiss in posting recently—the holidays are crazy.  So, to get back in the swing of things, here is another review.

Apex Pocket Med Pack with 7 Day Tray

For quite a while, I was just hauling my medications around with me in the bottle and remembering to take it as needed.  Most days this worked, but anytime I got distracted or busy, I would forget to take it, or I would forget if I already took it.  Begrudgingly, I finally bit the bullet and got a pill box.

I started with a traditional, 7 day case with a single box for each day.  But I found myself not terribly happy with this arrangement.  Yes, I could look at it and instantly tell if I had taken my most recent dose or not.  But I often found myself hunting for where I last put it, until finally I decided to try keeping in one particular spot.

This solved the search and rescue problem, but it was kind of annoying.  And I found myself getting off on my dosage timing.  I would notice it is time for a new pill, but since I had to stop what I was doing and get up and go the special spot set aside for the pill case, I would end up delaying it to finish what I was doing—sometimes even to the point of forgetting I needed to take it (stupid brain fog).  Anyway, I wanted something better and began the hunt.

What I found was the Apex Pocket Med Pack with 7 Day Tray.  Now, having been using it for a couple of month, I really like it.  It comes with 7 individual day containers labeled Sunday-Saturday. The cases are about 3 inches long by 1 ½ inches wide and oval in shape.  Depth is about an inch.

Each individual day container is split in the middle with an AM and PM.  However, I instead separate them into the 2 different types of pills that I take more than once a day.  (Side note: I keep the meds I take once a day in a traditional pill case on my nightstand, as I take those right before bed, so I don’t feel the need to carry them around).   The individual cases are pretty reasonably sized and I do not find them too intrusive in my pocket, but could potentially be visible in the pockets of tight pants.

The 7-Day tray then holds the individual day containers, and can be placed in one particular spot.  It is kind of silly, but I like that it can be arranged so that any day of the week can be the “fill day”.  On most traditional pill cases, they are designed to be filled Saturday night. I realize that I could move my “fill day” to any day of the week, but then you would not be able to work left to right as you take the pills, and for some reason this bugs me.  But with this pill case, I just move the day I want to be my “fill day” to the back of the rack and put them in order accordingly.  I can still work front to back no matter the start day.  Like I said, it is a small benefit (and probably only helpful for slightly OCD people like me) but I really enjoy it.

Before bed, I put todays (empty) individual pill case back on the 7-day rack and grab tomorrow individual day pack and put it on the night stand.  When I get up, I grab it off the nightstand, throw it in my pocket, and go on my way. I pretty much always wear pockets, so this system works well for me.  However, I can see it being a problem if you never have pockets and instead have to throw it in a purse or something.  Indeed, the few times my outfit did not have a pocket, it really threw me off and I kept misplacing the individual day container.

I love that when I notice it is time to take my next dose, all I have to do is reach into my pocket and pull it out.  No hunting or getting up to go get it.  And it does not take any special planning when I leave the house—as long as I have my pants on, I have my pills with me.

For me, this has pill case has been great; really what I was looking for.  However, I can defiantly see some limitations.  First, if you don’t often have pockets (or your purse by you 24/7) it will probably be no better than a traditional pill case.  I wanted to avoid having to get up and find my pills when I needed to take them.  If I can’t put them on my person, then it kind of defeats the purpose.  Plus, the smaller nature of the individual containers make them a lot easier to misplace if you are constantly having to move them around but not able to keep them on your person.  This could be potentially dangerous if you have little ones around, as there is little in the way to keep kiddos from getting into the containers.

Second, if you have shallow pockets, the individual case can occasionally fall out of your pockets.  The main two places I have this problem are reclining or when visiting the restroom.  It does not happen too often, and I have learned which pants are most likely to do this, but it can happen without you realizing it.  It has become a bit of a habit to check my pockets to make sure it is still there after these situations.

Third-the more places you take your pills, the more potential to lose them or have a kiddo get their hands on them.  There is a certain advantage to being able to keep all your pills in one (hopefully secure) place—much less likely a little one can get their hands on them.  Kids are notorious for thinking medications are candy.  And several of the medications that Dysautonomiacs take are very dangerous for little kids to take; even potentially fatal.  Obviously, the more places you move around with your pills, it increases the chance you could lose one that could find its way into a kids (or pets) mouth.  As I mentioned earlier, I could see this as a real danger if you do not often wear pockets and instead just try to keep in nearby.

Fourth-If you lose an individual day container, it reduces the effectiveness of the whole case.  As best I can tell, there are generic replacements available in a two pack, but it will not have the day on it.  You could still use it while missing an individual day case, but either the day names would be off or you would have to Gerry-rig something as a replacement, both of which would bug me.

Fifth-It is not going to help remind you to take you pills on time.  It helps me know if I already took a dose or not, but I still have to remember to take it on time.  I find this is not much of a problem for me, especially at home.  But if I travel, or just in general have really changed up my routine for that day, I can still forget to take my meds.

Despite these limitations, I feel the benefits outweigh the risks for me.  I am pretty vigilant about checking for it in my pocket, and find myself no longer wearing pants that are habitual offenders in terms of things falling out of my pockets.  And we have drilled it into our kids heads that if they even so much a touch the case for mommy’s medicine, they are in BIG trouble.  I just love, love, love having my pills on me whenever I need them.  Bottom line—I would recommend this for anybody who finds they have similar circumstances.

Apex Pocket Med Pack with 7 Day Tray, $6.00 as add-on available at Amazon and other retailers

http://www.amazon.com/Apex-Pocket-Med-Pack-Tray/dp/B000EGN1A6/ref=sr_1_2?s=hpc&ie=UTF8&qid=1386788733&sr=1-2&keywords=apex+pocket+med+pack

Bonus: Not sure, but this looks like a generic Apex individual case available on Walmart.com that has 4 compartments instead of 2.  Have not seen it in person, but the dimensions listed on the website make it seem like it is similar in size and might work in the 7-Day tray. http://www.walmart.com/ip/17786918?wmlspartner=wlpa&selectedSellerId=3&adid=22222222227014448850&wl0=&wl1=g&wl2=c&wl3=40430891950&wl4=&wl5=pla&wl6=35027463310&veh=sem

Nuun Active Hydration Review

Nuun Active Hydration Electrolyte Enhanced Drink Tabs, Original Mixed Four Pack Lemon-Lime, Tri-berry, Orange & Citrus Fruit.

As any POTSie knows, we are supposed to drink, drink, drink.  And I don’t know about yours, but my Doc likes it to be electrolyted.  Since I have yet to try using salt tablets, I need to add salt to pretty much everything I drink.  As such, this pretty much only leaves me with sports drinks.  My particular drink of choice is Powerade Zero, as I do not want the calories of Gatorade or G2.  I don’t know about you, but I feel like all I ever drink is Powerade Zero.  I am pretty sure I have enough Coke points to last till the end of time, and I still have a bag full of Powerade caps to enter.  So, getting very sick of Powerade Zero but still needing something salted to drink, I decided to give Nuun a try.

Not knowing which flavor to commit to, I got the Nuun Active Hydration original mixed 4 pack that came with a tube of Lemon-lime, tri-berry, orange, and citrus flavor.  There are 2 other types of Nuun, All Day and Natural Hydration, but both of those had lower salt content than the Active Hydration (differences discussed here).  Each tube has 12 tabs in it.  The tube is very handy for just throwing in a purse, and it still managed to stay closed while in my purse–no small feat in my handbag.  Definitely more travel friendly than hauling around a bunch of bottles.

I wanted something with less artificial sweetener–I worry I drink too much of it and I swear I think it makes me have sugar cravings.  Now, Nuun has Sorbitol, which is sugar alcohol. Anybody who is diabetic is probably familiar with it.  Unlike other, more traditional “sugar substitutes”, Sorbitol does have calories.  With Nuun, each tablet has 8 calories.  This was not enough to make a big difference for me, and quite a bit fewer calories than regular Gatorade.

Use is pretty simple, drop one tablet in 16 oz. of water and let dissolve (I actually used 20 oz. as that is what my bottle holds).  Only takes a few minutes and then it is ready to use.  The first thing that surprised me was how carbonated it is.  In retrospect, it makes sense, it needs to be carbonated to dissolve and mix properly.  But it was more so than I was expecting, very much like soda water with flavor.  The flavor is also pretty different from traditional sports drinks.  It is much less powerful and much less potently sweet.  Kind of like the difference between lemon-lime soda and soaking lemon & lime in your water.  Coming off of nothing but Powerade zero, it seemed pretty weakly flavored, but I think I could have gotten used to this.

My favorite flavors, in order, were Orange, Citrus, Tri-berry, and then lemon-lime.  To be fair, I have never really been a lemon-lime fan for anything.  I was also surprised how much I did not care for the Tri-berry, as I am usually a berry flavor fan.  But most berry flavors are pretty sweet, so it may have just been different from what I am used to.

I was not terribly partial to either the flavors or the carbonation.  I have never liked carbonated water, however, and I think I could have gotten used to the taste.  I tried letting the Nuun sit in the water bottle for several hours to let the carbonation go down.  I liked this better, but it was a real pain having to wait until the carbonation dissipated.

But my biggest problem, however, was headaches.  For 3 days straight, every time I tried to drink one I got a headache.  I am not sure if it was the Sorbitol, the carbonation, or both; but after 3 days of headaches, I gave up on it.  I wanted to like it, I really did.  And it is possible that I would have eventually adjusted after tying it long enough, but it was just not good enough to bother keeping on trying it.   For me, I cannot recommend it.  However, I know many people who swear by them, so if you are not the sensitive type (especially to carbonation or Sorbitol) it still might be worth a try.

Nuun Active Hydration, brought off Amazon for $17.99, but available at multiple retailers

Review: Vital ID Medical Alert Bracelet

This is the first of many posts I intend to dedicate to reviewing products/services/medications/etc. that have I have tried to assist me in dealing with dysautonomia.  I have not received any compensation for my opinions.  My only hope is that people are able to use my reviews to determine if something may or may not be able to help them.

VITAL ID MEDICAL ALERT BRACELET

One of my favorite medical alert bracelets I have tried is my Vital ID Med Alert Bracelet.  It is unlike most traditional medical bracelets–it has no metal, and there is no engraving.  It is made of woven textile and Velcro, which makes it easier to put on and take off.  It feels like nylon, but that is just a guess.

Instead of engraving, it comes with a thick paper insert that can be written on. It fits inside a small enveloped area on the inside of the bracelet, which can be accessed by pulling the bracelet off the wrist.

It has room for putting your name, diagnosis, medication, and 2 emergency contact numbers on the front.  The back is blank, and leaves plenty of room to add more information.  You can order more if your medications change often.  Be sure to use a permanent marker (I suggest fine tip) to write in your information so it does not smear when folded.

It is definite a more “sporty” look—no one is going to mistake it for jewelry.  There are both child and adult sizes with multiple colors in each size (there are probably more fun colors available in the child size, but my wrist is too thick).

Make sure to measure your wrist to find out which size is best for you.  I would not suggest getting one that is too tight.  I have not had any problems with the bracelet annoying the skin around my wrist, but I could see a problem if it was so tight to cut off air circulation—the fabric does not strike me as the most breathable.

I have washed it several times, though never in the washing machine.  Just a hand wash and air dry, but this was always adequate to deal with any dirt, stains, sweat, etc.  Obviously, take the paper insert out.  I have gotten the bracelet wet a few times–such as when washing hands–but have not had too much trouble with it warping the paper.  This is splash up, though, not soaking it.  I think you would have to get it pretty wet before it started warping the paper or blurring the ink.  Even so, I take it off when doing the dishes, giving the kids a bath, etc.

I enjoy that it is a more casual look, and the ease of taking it off and putting it on is very helpful with all the chores I do around the house.  I don’t really worry if it gets sweaty or messy, and it does not bounce around or move too much on my wrist.  I would love it if they expanded into some of the fun kid colors into the adult sizes.  Most importantly, I enjoy being able to easily add/change any drug or doctor changes, which is pretty frequently.

Overall, I like it and would recommend.

Vital ID Medical ID Bracelet, $16.95 at https://www.vitalid.com/shop/medical-id-bracelet/ and other online retailers.